Consensus was: safety is improving – from 2011 the mortality rate has been 0.3% rather than 1-2%. Due to impressive rates of NEDA ( no evidence of disease activity – relapses or on MRI) – 80% at 2 years and 70% at 4 years in one study;

Yes, but ONLY in cases of early/new, highly active/aggressive relapsing remitting MS, where person is young, still walking, and treatment with first & second line treatment have failed.

And now for something completely different, and please DO try this at home(!): Seriously, I will be

This beautifully carried out RCT had people with progressive forms of MS taking 1,200mg of Lipoic Acid, a supplement often sold as an ‘anti-oxidant’, and also called ‘alpha-lipoic acid’ once a day. A control group took a placebo.

After 2 years, the group taking the lipoic acid had a whopping 66% less brain atrophy on MRI scan ( showing less loss of brain cells), taking them back to a normal rate of brain atrophy, and half the number of falls.

Love it when something so harmless is investigated properly and found effective. Especially good to have something positive for progressive MS!

showed that as we know, effectiveness in reducing relapses from lowest up goes: Interferons, then Fingolimod, then Alemtuzemab and Tysabri. The last 2 showed the same effectiveness in preventing relapses. Natalizumab also showed improvement in disability in the first year, but not after that. and as we now the side effect profile and the way you take it is very different. Tysabri also has a rebound effect if and when you stop taking it.

Alemtuzemab

research was presented that showed this drug performing very well in ‘resetting’ the immune system. Around 60% of people did not need more than 2 infusions, and NEDA ( no evidence of disease activity) was very high., but only when used EARLY. Time to change from the ‘wait and see’ attitude? This is the push from leading MS experts. Maybe check in with the MS Brain Health campaign if your neurologist is dragging their feet.

Vitamin D

very strong evidence coming through from numerous sources that notwithstanding previous medical controversies and uncertainties, all people with MS should be on high dose from diagnosis – 4-5000 IU daily at least, and testing ( backs up info already posted on this blog) MS Base ( a database with over 41,000 people with MS’s records) showed a clear seasonal peak in relapses around the world, at the end of winter; with a time lag, shorter in colder countries. Low vitamin D levels were the strongest risk for progression in another study, and added a further anti inflammatory effect to people already on a disease modifying treatment, in another.

One study found that people with MS given 100,000 twice a month for 2 years had a 60% reduction in relapse rate, and a 78% reduction in new lesions, compared to placebo. Powerful stuff, hopefully enough to finally swing the doubters.

Siponimod for progressive MS

presented as promising new treatment but I missed that session so – investigate!

Scientific highlights presentation – was split into 3 sections ‘migration and CNS injury’, ‘Gut and Food’ and ‘remyelination and oligodendracytes’

At the end of the event, I was really surprised to see these slides in the highlights – I missed the full presentation but one slide went like this:

Went on to describe how animals with this experimental model of MS respond very well to hyperbaric oxygen: Oxygen therapy reduces pattern 3 demyelination.

So maybe we will see some new research showing usefulness of hyperbaric oxygen? If you can access it, I always say that it’s worth trying, and observe the effects on yourself.

Diet and Gut in MS

Feels like finally, the importance of aspects of diet is being addressed and listened to in MS research. In fact all present were enjoined Not to ignore environmental factors. Hurrah! a strike for logical thinking!

This was a feature of quite a lot of research at ECTRIMS. Lots of research on the role of the Biome ( bacteria in the gut) and how it affects MS. Interesting, exciting, but we still haven’t nailed practical application yet, so best bet is Take a daily probiotic capsule or powder, with as many different strains in as possible. And do these things, discussed previously.

Being overweight was identified as a serious risk factor for both developing, and worsening with MS. If you’ve got pounds to lose, check out the excellent ‘Fast Diet/ 5:2 diet’, showcased by Micheal Moseley on the BBC -https://thefastdiet.co.uk/ fasting also has benefits for inflammatory conditions.

Salt:

salt stored in the skin was posed as a driver for auto-immune neuroinflammation in one paper. People with MS were found to have higher levels of salt in the skin….so that too… we could all cut down our salt – most is found in processed foods… and as you do it, your tastebuds acclimatise so it won’t mean you won’t taste your food.

Ending on a high

Conference ended on a high note, celebrating the huge progress that has been made in preventing disability – progress that started even before the availability of the disease modifying drugs, but has in recent years added a further 15 years of non-disabled life to the average MS-er, and is still making leaps and bounds.

I hope I’ve made an accurate summary of the sessions that I attended – mistakes are possible, and they will be all mine. If you spot one, please let me know!

Important news if you are on, or considering the new oral drug Tecfidera ( also known as BG12). On 22nd October Biogen Idec reported the first case of progressive multifocal leukoencephalopathy (PML) in a Tecfidera patient, who had been part of a clinical trial and was taking the drug for 4-1/2 years. PML is the rare but potentially fatal brain infection that is a serious possible side-effect of Tysabri, but until now had not been reported in people who had only taken an oral medication. 11 people taking Fingolimod have had PML; 10 of these had previously been on tysabri, and one is considered to have had PML before commencing fingolimod.

If you are on Tecfidera, the advice is not to panic. This patient, who died of pneumonia, had been suffering severe lymphopenia, a low white blood cell condition, for more than three years, which Biogen said was a risk factor for developing PML. A more in depth discussion about this is on neurologist Gavin Gionvannoni’s blog, here:

Not to be confused with personal budgets (!) which means you get to control the money for any social care, a Personal Health Budget is a one-off payment that can be used to pay for something that helps you in your life with a long term health condition. It could be something like an air conditioning unit, or piece of medical equipment, or it could pay for regular therapy or exercise classes, transport, or help to remain independent or at home. If you receive Continuing Health Care -( extra money to support your health if you have complex needs which are rapidly changing and you need nursing type interventions fairly often), then you now have the right to have a Personal Health Budget. There’s a lot of talk about how other people with long term conditions now have a right to ask for one – but sadly neither Bedfordshire or Northamptonshire are offering these to people with MS at this stage.

On a lighter note,

Reasons to be cheerful – part 1

New and more effective treatments are becoming available for overactive bladder. If you’ve been through all the firstline treatments and are still suffering from urinary urgency, ask about Mirabegron, which is having great effects for some people.

Also becoming more easily available on the NHS is Tibial Nerve Stimulation, a treatment that developed from acupuncture, where a course of treatment using a tiny needle, inserted just behind the ankle, can calm down both an overactive bladder, and sometimes also be very effective for bowel urgency.

Reasons to be cheerful – part 2

Another area that affects some people with MS, where advances are being made, is in treatments for Trigeminal neuralgia. If you have been plagued for a long time by this very painful problem, have a look at Sterotactic radiosurgery on the NHS choices website, or ask to talk to someone about this. http://www.nhs.uk/Conditions/Trigeminal-neuralgia/Pages/Treatment.aspx

Reasons to be cheerful – part 3 … wish I could sing it like Ian Dury…

Following the success of APS Therapy for many people’s painful conditions, and noticing that many people have reported other unexpected benefits, we are now opening APS therapy at the Bedford MS Therapy Centre up for other problems that members may wish to use it for. The most noticeable and frequent ‘other’ benefit is improved length and quality of sleep, so for sleep problems. Some people, though not all, report improvements in energy, so; fatigue. Significantly, 3 people have reported that they were having recurrent urinary tract infections prior to starting APS, which resolve when using it, so; recurrent urinary tract infections.

Anyone wishing to discuss this, please make an appointment to see Miranda or Emma.

and Part 4 –

Training going on apace all over the place! I’m doing the first presentation and training course for practitioners from the MS Centre on Saturday 1st Nov

Updating modern matrons on MS on 14th December, and, nudged by recent bad experiences one of our members recently had in hospital, Emma and I will be offering MS updates for hospital staff, and instigating working with hospital staff to improve the ‘pathway’ – ie -what happens to a person with MS when they interact with the NHS in Bedfordshire.

Also, if you don’t follow my online blog, you will have missed me banging on again about the importance of gut health etc. It’s all coming together, so watch this space for the ultimate plan!